Hubby had sarcoma now melanoma

[legallygray]

I'm new here. Has anyone else has experience with spouse or self having a sarcoma diagnosis (3 years ago, things were looking good lately - CT scans, etc.) but now has new melanoma diagnosis, stage 4. If so, any advice? How to keep the patient's spirits up??

[missyrand Ambassador]

Dear Legallygray (BTW, awesome name

I'm sorry that you and your family are facing cancer again, and at a higher level of acuity.

I have not had this experience of sarcoma and melanoma in my family. But I know that the literature indicates that if you have 1 kind of cancer you are at anincreased risk for another vs the general public who has never had cancer.

Melanoma is sneaky cancer. Stage 4 means that there is a metastisis from a primary site (although not all melanomas have an identifiable primary site). I think if you read through posts you will see that most of us have benefitted from learning as much as we can about what melanoma is, the details of our particular diagnosis (what is the primary site, have lymph nodes been tested and are they involved, where are other tumors, what "type" of melanoma: BRAF positive or "wild" type. Then find an excellent melanoma specialist to talk with and partner with to make informed treatment decisions.

As with most cancers, the first line of treatment is to see if the cancer can be surgically removed. Then you look at which interventions have the best chance of targeting the type of melanoma your loved one has: immunological interventions are the current best approach in most cases, and there are several different drugs, combinations of drugs, and clinical trials available. Chemotherapy is not used as a primary intervention, but is sometimes used as a palliative approach to extend life. There is still some very limited use of Interferon, but the side effect profile is pretty brutal and again, a discussion of the pros and cons of each treatment should be discussed. And all doctors are open to second opinions. That being said, Stage 4 usually means you need to get seen and make decisions as soon as possible.

As for keeping spirits up, President Jimmy Carter is a splendid example of someone diagnosed with Stage 4 melanoma, with multiple mets sites, and has had aggressive and excellent treatment: he is still here, active in life and with his family.

For me, asking our loved ones how much they want to know, and how involved do they want to be in their care decisions is a good place to start. Talking about what are the key ways we want to live our life, and then designing and choosing treatment with those goals in mind gives clarity to the whole family and team. Asking the provider direct questions about potential treatments, side effects, prognosis, and what if you choose not to do one of the treatments can all be on the table. Consider also inquiring about Palliative Care, which is different from hospice. Palliative Care means that treatment can continue, but there is a focus on quality of life that is different. There are some postings on the site about this, and good information online if you want to learn more.

I hope that you and your loved one have good supports around you. Please know this site continues to be a resource as you journey forward,

Missy

[legallygray in reply to missyrand]

Missy,

Thank you so much for your kind and very thorough reply.

I appreciate your note very much and will continue to refer back to it in the future. I've waited to reply until we had more information.

An accountant and farmer of Irish descent, my hubby has stage 4 desmoplastic melanoma.

Here's an update. It showed up as a little skin-colored bump on his scalp, at the mid-back of his head, at the junction of his hair and his bald spot. He noticed it in August and had our dermatologist look at it at the end of September. The dermatologist didn't like the looks of it from the first time he saw it. He immediately did a biopsy. The pathology report took a while to come in, about a week longer than the pathology report on a basal cell carcinoma at one eyebrow that the doctor also biopsied the same day. We were told the delay was because it's very difficult to be sure just what type of cancer this is - it may even appear to be a sarcoma. They are now satisfied to i.d. it as desmoplastic melanoma.

My husband was then sent to an E.N.T. for the surgery to remove the little tumor and place a graft on the surgical spot. The surgery site is a little bigger than a silver dollar and the graft was taken from near the clavicle. Despite the fact that a PET scan showed no sign of any metastasis, both his surgeon and now his oncologist say that the depth of the tumor makes it stage 4.

A few days after the surgery, last Monday, my husband saw his melanoma oncologist, at the University of Iowa (we live in the area). The melanoma oncologist is also my husband's sarcoma oncologist, and has very much earned my husband's trust.

His oncologist has said that unfortunately there are no clinical trials on desmoplastic melanoma, it's very rare. If needed, they will use Keytruda.

In addition to this new melanoma, my husband also has stage 4 dedifferentiated pleomorphic liposarcoma - which, like his melanoma, at this time is not showing up anywhere, but they feel it is also lurking in his body.

Three years ago, the sarcoma first appeared as a small lump on his back that was misdiagnosed by an internal medicine doctor as lipoma, but it grew large rapidly and ultimately he received this sarcoma diagnosis, and surgery. That scar is about 7" in diameter, near the shoulder blade.

His oncologist has told us that for both of my husband's cancers, in five years, 50% of the patients are still living. So we'll hope and pray that he's in the lucky 50%!

For now I guess we wait and watch, and have some fun.

[missyrand Ambassador in reply to legallygray]

Legallygray,

I'm encouraged by your update that you all are getting thoughtful review with an oncologist who knows the literature and your husband. I had to go look up this rare form of melanoma and found this recent (Feb 2017) review: dovemed.com/diseases-condit...

We are all together in the hope and prayer circle with you and your husband. Watchful waiting while having fun and focusing on living in the ways that are the most important to you and your family brings meaning and joy that can refocus energy. I imagine right now that anxiety is still percolating, but hope you both can redirect your energies as best you can as you live with these 2 skin cancers.

My best to you from the DC area,

Missy

[Crackerjack4u]

Hello legallygray, I'm so sorry that you all are going through all this. We are going through something kind of similar here,(although the Cancer names have been changed, and the order moved around some but, as I'm sure you all are aware, when it comes to cancer there is no rhyme or reason to it for sure). On my search for answers, your husband's journey jumped out at me as one I needed to follow because of some of the similarities.

I still don't have all the specifics on what all is going on with my hubby (as we are still awaiting the final biopsy results from his last biopsy, we have a Preliminary report but not a final, but here's what we've had going on so far. He had a small area in the lower lobe of his right lung noted in 2016, biopsy showed lung cancer, attempt to surgically remove unsuccessful due to too much scar tissue in the lung. (The surgeon said the only way he would be able to remove it would be to open him up completely, remove ribs, etc. , and with my hubby being diabetic, and having multiple other med issues he didn't feel comfortable doing that at this time for such a small tumor, and with the size and location it isn't likely that it will spread. So he started having radiation instead. 5 radiation treatments later Petscan showed everything else is unremarkable, and that the tumor had shrank to half it's original size, Radiation Oncologist said for him to have repeat Scan in 6 months to see if it's still shrinking, or if more radiation is needed. (Me being a RN, but now disabled myself, plus a worry wart to boot asked is there's a chance the cancer will spread in that time while we are waiting and doing nothing?) Radiation Oncologist response was very similar to the original surgeon's. He said the size of tumor is small and it will be continuing to shrink during that time along with the location that is contained in the center of the lung, so the likelihood of it spreading is not likely at all.

4 months after the 5 radiation treatments were done my DH ended up in ER on Aug 24, 2018 with unrelieved chest pain that moved to his epigastric region (His gallbladder has been removed so we knew it wasn't that). Catscan done in ER revealed 2 large masses 1 on each of his adrenal glands, and a couple of enlarged lymph nodes that we are certain were Not there 4 months before or the Petscan would have revealed them- DX 2 large Adrenal masses with suspected lung cancer metastasis, and lymph node involvement. Biopsy of 1 of the enlarged lymph nodes on 9-14-18. Follow up appt with Oncologist 9-25-18 Oncologist walks into the room and said, "We don't have your final report back so we can't be 100% certain yet, but we do have a Preliminary report" and what it's looking like is something "weird and not at all what we were expecting to find." He said we were expecting to find lung cancer metastasis but it is not, so far everything is pointing towards a Sarcoma, but they're not sure which one yet, nor completely sure it is a Sarcoma but that's what all the signs are pointing to so far, and that's what's holding up the results of the final report, and him starting treatment.

In the mist of all this madness, waiting, and worrying above I too located a small skin colored raised area in the center of my hubby's scalp, right in the bald area just like you described with your hubby. I was using the watch, wait, and see approach because it is so small, and felt he has bigger problems right now than that little area on his head, but after your post we will for sure be getting it biopsied ASAP, as well, because his too could be melanoma.

Sorry this ended up being so long, and I'm even more sorry that I don't have any advice to offer at this time for either of our DH's, but I am constantly researching trying to figure out where to go from here, and if I run across anything I'll be glad to pass it along to you. Again I am truly sorry that you all are going through all this. I hope you have a nice day. CJ

[legallygray in reply to Crackerjack4u]

Hi Crackerjack4u - I'm sorry you and your husband are facing all of this. And I'm sorry to have taken so long to respond. We were out of town watching the Cubs . I'll write more later today. This is so annoying and really so very, very minor but I'm having blurry vision due to dry eye. I suppose the wind and all that good old fresh air exacerbated the problem. I guess Bette Davis is the one who said, "Getting old isn't for sissies!"

[legallygray in reply to Crackerjack4u]

My blurry eyes are functioning much better now! (See my earlier note, below)

I think you are very wise to have a dermatologist take a good look at the skin colored raised area on your husband's scalp, and have a biopsy done if the physician thinks it's suspicious.

I'm also very sorry it is taking so long for them to arrive at a diagnosis. It was that way for both of my husband's cancers as well. My understanding is that both of his cancers are extremely rare, making it more difficult for them to make a determination of just which kinds they were.

His sarcoma is dedifferentiated pleomorphic liposarcoma and the tumor showed up next to his right shoulder blade. It seemed to be superficial and the tumor was about 7" in diameter and 3" thick. It grew dramatically in the 2 months between diagnosis and surgery, to the point that he called it his third boob. His treatment for this liposarcoma included surgery to remove the tumor, chemotherapy (but I'm not sure just what was used - if anyone needs to know, I can look it up), and radiation. The surgery was delayed a month because he had a very scary episode of pulmonary embolism that his doctor felt was caused by the cancer.

His recovery has gone very well and he had a big checkup two weeks ago - CT scan - and they could find nothing new anywhere. The same was true of his melanoma.

As they told us at the Holden Cancer Treatment Center at the U of Iowa, his new cancer, the melanoma, has bought him 3 more years of visiting them!

I plan to write again tomorrow or Wednesday. I hope things are going better for you by this point.

[Crackerjack4u in reply to legallygray]

Thank you hun for the info. I'm glad your eyes are doing better, hope the Cubs game was a good one and that you and hubby were able to enjoy some quality fun time outside of the constant wait and worry environment that cancer forces upon us all.

I'm glad to hear that nothing new was found at his follow up and keeping my fingers crossed that it remains that way. The 1st visit to ER on 8/24 they were concerned about mine having a pulmonary embolism also, but all the test were negative for that.

Hubby has his follow up today with his Oncologist and the Final Report with the diagnoses will hopefully be completed so we can start to move forward from here. He had a horribly bad day yesterday, and spent the day in the bed except to get up to go to the bathroom. I got him to drink quite a bit-what he didn't vomit back up, but was only able to persuade him to eat 1 banana popsicle the entire day. I'm hoping the day in bed doesn't cause him to get pneumonia again. He's up and moving around this morning and said he still doesn't feel good but does feel better than he did yesterday so hopefully today will be a much better day for him.

We started him on Marinol on Sat which seems to have helped some with his stomach pain, and nausea (except yesterday but I think the problem yesterday was because he has not been wanting to take his laxatives and has allowed himself to get impacted). He also has 100% CBD oil coming this week in the mail so hopefully the 2 will help with his nausea, vomiting, appetite, pain, and weight loss. I'll let ya know what we find out at the doctor today if the Final Report is ready. Please keep me posted on how you and yours are doing. I hope we all have a nice day. Hugs to you.

[legallygray in reply to Crackerjack4u]

I hope you have received the doctor’s report by now and I keep you and your husband and all of his team of caregivers in my prayers.

[Crackerjack4u in reply to legallygray]

Thank you legallygray. Unfortunately, It was not finished yet. Now they need more tissue because they have done so, sooo, many tests on the 4 small samples they had that more is needed. This time they want an entire lymph node so they can visually look at it, and also ensure they'll have enough tissue to hopefully figure out which sarcoma he is dealing with, etc.

I guess the only way to look at it is that at least that's 1 lymph node that won't be spreading it's poison in his body while we sit waiting for answers. And he had lost another 5 pounds ;(.